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Sjogrens – Through Hoops We Must Jump – *Adult Content*

The pathway to diagnosis of Sjogrens disease can be a long and drawn out one. I compare Sjogrens to being a huge jigsaw puzzle that can take many years to find all the pieces and piece them together and during that journey of diagnosis, you can often not only be pulled in different directions but worse still – disbelieved entirely by those that are either completely uneducated (I prefer the term ‘stupid’) or by health care professionals that are only looking at ‘one piece of the jigsaw’ and not seeing the whole or potential picture of your overall health.

My Childhood

As a child I remember having a mouth full of mercury fillings as my teeth happily decayed rapidly over a period of time. I would brush my teeth twice a day but Sjogrens people will tell you that you need to brush them within 30 mins of having a meal so you can imagine the damage brushing teeth only twice day can cause.

Dentists would accuse me of not caring for my teeth and even when I got my adult teeth, my gums had receded and I was prone to dental issues that were to plague me for a huge part of my life.

My dentists in London would firstly ask if I was pregnant as that can have a profound effect on the gums, then accuse me of ‘not flossing or brushing’ and generally not being compliant. My gums would continue to recede and I would develop cavities that were not obvious but would only show in an X-ray that they were developing under the back teeth and each and every time, my dentist would despair of me and quite frankly, I would despair of myself because there is nothing worse than being called a liar.

As an adult

Living in London was as you can imagine made for a hectic life. At the weekends I would go to car boot sales with my friend Norma – our favourite being Denham car boot sale which was huge and excited though I was, I would have to keep sitting down, swallow some pain relief and get totally exhausted on a seemingly calm morning just walking around after having some sun exposure which at the time, I did not know I was sensitive too.

Girl talk *Graphic Female Content*

With Sjogrens, the dryness throughout the body can cause certain ‘female issues’, which can result in repeated testing for various STD’s and no matter how many times that you tell your doctor that no, you don’t have an STD, they will insist on those tests being performed. It got to the stage where I almost changed my middle name to ‘Candida’ just to shut them up.

The obligatory phone call would come and say ‘No, Mrs Rose, you don’t have an STD but you do have thrush’ and then they would reel off the usual crap about what cream to purchase. I had one GP tell me that my issues were ‘Psycho Sexual’ – well excuse me ‘Doctor Bollocks’ although I will admit to finding the male genitals ugly, I do actually quite like sex thank you kindly.

Fast forward to now

Now that I have a diagnosis has any of this become easier? Well actually no, peoples attitudes are still pretty much the same, I still have the odd person that perhaps thinks that I am a hypochondriac because as anyone with Sjogrens or Lupus will tell you, we get attacked from all angles – pain, tiredness, sore eyes, sore lungs, you name it we get it. But we also have to suffer the stupidity and ignorance of many that believe illness to affect only one part of the body and even then, in their eyes, you can only get sick once or twice a year before you officially become a hypochondriac.

However I do find it somewhat amusing that when people like that are sick themselves, their colds very quickly ‘become flu’ and I truly believe that these people would not survive a week if they had to live with an auto immune disease of any description.

The funny part about it…

What makes me laugh about Sjogrens – well there has to be something doesn’t there? When I go to collect my drugs I normally am faced with some level of interrogation, warning or questioning about what I buy.

Painkillers and other drugs – an incident in a pharmacy a while ago

I had gone to a pharmacy to get my painkillers, anti malarials and steroids plus some eye drops. ‘Do you know what these are for?’ The chemist said in a firm voice, holding the plaquenil tightly in his hands. No shit sherlock, I haven’t a clue why I am taking anti malarials, I just take for the fun of it and for the fabulous psychedelic dreams that I get.

‘Do you know the side effects of these, have you had them before?’ He asked. Oh dear, it was going to be one of those days I could feel it in my water.

‘Can I also have some of those please and pointed to my painkillers that sat winking at me on the shelf. Those beautiful little darlings that reduce my pain levels from a 6 to a 2 on the pain score, they SO wanted me and I wanted them. I mean, come on – how many Sjogrens/Lupus patients clock watch till painkiller time? I know I do ‘It’s panadol-oclock’

‘Can I see your driving license please?’ The pharmacist asked me – glaring through his little steamed up glasses, his face going red with excitement that he may actually stop a ‘druggie’ in their ‘tracks’ (get the joke there?).

I passed him my license, he scanned it with his eyes and then looked up at me accusingly, hell – I was sure he was even checking my arms for track marks.

‘Did you know that the codeine in these tablets is addictive?’ He said with his mouth disappearing into the shape of a dogs bum in disapproval.

‘Yep, I know that’ I replied – I was being very restrained, I wanted him to shut the fuck up and give me my painkillers. Then I added ‘But if you want to see REAL addiction, then try taking me off the steroids because that is one baby I am TOTALLY addicted to’ (and it’s true as well)

‘Why don’t you try Nurofen?’ He said in a firm ‘I know best voice’

‘Because I am allergic to them’ I replied – my goodness I was being polite.

‘Have you seen your doctor about the reason you need these painkillers?” Mr Dog bum mouth pharmacist asked.

‘Which doctor – the eye specialist, the skin doctor, my GP or the immunologist?’ I snapped and then added ‘Take your pick’

Remembering that I needed to ask some advice for about mouth ulcers caused by the Methotrexate and I also had to buy some ‘girls’ cream for ‘down there’, I whispered to him what I wanted so that only he could hear. Perhaps this would take the heat off me asking for painkillers.

‘If you want something for THRUSH, I think that you need to see your doctor’ he yelled and I mean he yelled – the bastard, I wanted to pull his hair by now, I was getting somewhat angry because the entire shop now knew that I had a vagina – well I knew that I had a vagina myself but ‘lady gardens’ are sort of sacred and one doesn’t think of them until they are shouted about and very loudly in the middle of the chemist and then it is a case of ‘Oh look, she has a vagina.

Oh my god, it was happening again – I could already envisage going back to the doctors and telling him about my Sjogrens mouth sores and whatever cream I needed and then having to be tested for the millionth time for an STD. It wasn’t happening, really it wasn’t – no way no never. Now the chemist was looking at me as though I had made friends with a posh girl called Chlamydia.

I was so angry that I wanted to test the boundaries as you do, I was seriously pissed off. Having a disease like Sjogrens is hard enough but having to deal with people that don’t believe you are sick is one thing but then you go to the chemist to get the medication that you need and you are accused of being a drug addict with a diseased minge and mouth ulcers.

‘Can I have two boxes of those please’ I repeated and pointed to my usual painkillers and then remembered that I needed Panadol Osteo which is rather good for rheumatic pain and helps me sleep through the night.

Oh my goodness, you should have seen his face – his mouth had all but disappeared and he went rather red and said in a somewhat high pitched voice ‘you want them all – all 3 packets, do you know the dosage?” he looked around for support or was it an audience, I wasn’t quite sure.

‘Just give me the damn painkillers, my plaquenil and steroids, keep your thrush cream and oral gel, just give me the painkillers’ I said, literally glaring at him. I mean, can you imagine if I had cashed in my methotrexate script – it would have finished him completely.

I must have looked a touch demented because by now the entire shop knew that I took painkillers, had a vagina of my own, had mouth ulcers and dry eyes because I was also hugging a box of Poly-tears. Thank god I never asked for my inhalers as that would have sent the pharmacist over the edge, dribbling into his coffee.

He handed me the painkillers but wouldn’t quite let them go so it was a slight tug of war but I won because I was pissed off and must have had a face like a bulldog chewing a wasp.

I would like to say that was the sum total of my medication but I also had to buy a giant tub of Omega fish oils (helps the joints/dry eyes), plus some Biotin to stop my hair falling out and some Biotene mouth wash to stop my teeth falling out and some fake saliva as I don’t have any. My basket was literally overflowing at the counter and the shop assistant just stared in shock/amazement at the wide selection of health stuff and prescription stuff that I had to pay for. I thought for one moment she too was staring at my lady garden but I could be forgiven for being paranoid.

Are you sick again? (you just can’t fix stupid)

‘Are you sick again?’ You get people asking, well I don’t with my close friends as they really are that – genuine friends but anyone with Sjogrens or Lupus will confirm, that question is asked many times to many of us.

No you idiot, I pretend my joints are swollen or my lungs are dry and I have this nasty dry cough, I pretend that my eyes dry, red and painful, I love taking dangerous cytotoxic drugs to make myself feel better, I love taking steroids that have a whole plethora of side effects and even better, anti malarials that can cause retinal damage.

So you see, not only do we have to jump through the hoops of the medical profession to get a diagnosis, we also have to jump through pharmaceutical hoops to get our medicine, and we have to go to extreme lengths to prove that our lady gardens are not disease infested furry money boxes and that we do really like sex and routine STD checks are not required thank you.

But may I tell you what the biggest insult is? It is after jumping through the hoops above, we also have to prove to many, that yes we really are sick, the sun hates our guts, we are not boring despite the fact we cannot drink, we need lots of sleep, we are not senile – we just have brain fog, we are not fat – we are on steroids, we do still love our hair – we are just losing some of it through illness/medication and if you see us stock piling our painkillers with a look that is comparable to a starving dog, we are not addicts, it is because if we don’t get them, quite simply we cannot function.

Suggestions on how to deal with the above – all in good fun of course!

For all those that can relate to what I have said, here are some (fun) suggestions on how to deal with those issues. I don’t of course recommend you actually do these but the thought of it could cause a giggle or two.

The obligatory STD check

So you have thrush again! That is a bummer isn’t it. Go to your doctor and give them the benefit of the doubt that they will know that you know your own body. If they for the millionth time, suggest you might have sexual issues or perhaps an STD, tell them calmly that you didn’t think you could catch Chlamydia by having sex with donkeys. Don’t forget to scratch your head in confusion as you say it and then add that you could be pregnant and ‘Dobbin is the father’

Chemist issues (yes, chemists ARE only doing their job when they question you but we do and are allowed to feel frustration when it is the same chemist and it happens repeatedly)

If you go to your chemist and are faced with the questioning on pain relief, tell them that yes, you know the dosage but your preferred method of consumption is by crushing them up, mixing them up with sherbet and snorting them through a $50 whilst sitting on the toilet. If he asks you whether or not you know the effects of your steroids, tell him that no you don’t and is that why you have gained 5 stone in one week and have started to cry over Lassie movies or Home and Away?

Friends/relatives and stupid comments

What can I say on this subject – tell them to piss off but promise that when they become sick, you will laugh at them and hide their tablets and snap their walking sticks.

On a more serious note…

My own little bit of news on the Sjogrens front. I have been over ten weeks on the Methotrexate and this week switched to injections which was a bit scary as you can imagine.

Taking it in tablet form is one thing but when you get the bottle that says ‘Cytotoxic’ on the front and you actually see the needles and syringes, you sort of think ‘shit, these are the big guns’ and I don’t mind telling you that I cried a bit. Well when I say cry, no tears came out as I don’t produce them so I looked like a faker, but you get what I mean.

I am pleased to report that my nausea has disappeared as normally the day after the tablet I feel really sick but with the injection I haven’t at all, I have felt exhausted and weak but not sick.

Today I even managed to go to the gym which is great for me. I have decided not to berate myself if I cannot make the gym, just be grateful for as and when I can go and praise myself for managing any of my workout. I did 36 leg raises today, if I keep this up I could have a 6 pack – or is it 8?

My joints are a bit sore after this mornings workout but I am revelling in the fact I have heaps of saliva. You see that is how I judge my progress – having saliva excites me immensely, I am sure you understand.

That’s it for me – I am off to have my tea and sort my work stuff out for tomorrow.

1 thought on “Sjogrens – Through Hoops We Must Jump – *Adult Content*”

Wow… you said a (dry) mouthful here, but unfortunately all of us with lupus, sjogrens, mouth and nose ulcers, sun sensitivity, joint pain, asthma (yes I have that too…. didn’t you mention inhalers?) etc. can relate to your frustration and pain. Your post sounded like a lupus patients nightmare, but all too true!